Is Stelara working for anyone?

[tzvia]

So, it's time for me to get on medication.

I've been very reluctant to use any meds other than entocort due to fear about side effects.

But it's clear that i need something to help control the D and improve quality of life.

Of the choices he gave me, I'm leaning towards Stelara based on what I've read. Has anyone here used it and been satisfied?

My particular crohn's look like inflammation and stricturing of the small intestine, and lots of D. Involvement mostly near illeal area. I did have a resection in 2014.

 

[Echodog]

So, it's time for me to get on medication.



I've been very reluctant to use any meds other than entocort due to fear about side effects.



But it's clear that i need something to help control the D and improve quality of life.



Of the choices he gave me, I'm leaning towards Stelara based on what I've read. Has anyone here used it and been satisfied?



My particular crohn's look like inflammation and stricturing of the small intestine, and lots of D. Involvement mostly near illeal area. I did have a resection in 2014.

Stelara is working great for me. It has pretty much healed 3 draining fistulas and I’ve gained 20 puunds. I’m on the injection once a month and it’s working. It’s stupidly expensive, fortunately my insurance is covering it. I’m surprised they aren’t recommending Remicadee first. Remicadee worked wonders before I became allergic

 

[tzvia]

Stelara is working great for me. It has pretty much healed 3 draining fistulas and I’ve gained 20 puunds. I’m on the injection once a month and it’s working. It’s stupidly expensive, fortunately my insurance is covering it. I’m surprised they aren’t recommending Remicadee first. Remicadee worked wonders before I became allergic

That's awesome!! How long did it take before you noticed it working?
It's me, not my Dr. who is reluctant to try Remicade. I know it can cause scray side effects and also tend to stop working to to people building up antibodies quickly. I'm looking for something that's associated with longer term outcomes and less of the scary potential side effects.

 

[ronroush7]

So, it's time for me to get on medication.

I've been very reluctant to use any meds other than entocort due to fear about side effects.

But it's clear that i need something to help control the D and improve quality of life.

Of the choices he gave me, I'm leaning towards Stelara based on what I've read. Has anyone here used it and been satisfied?

My particular crohn's look like inflammation and stricturing of the small intestine, and lots of D. Involvement mostly near illeal area. I did have a resection in 2014.

It didn't work for me but everyone is different. Wishing you the best.

 

[Echodog]

It didn't work for me but everyone is different. Wishing you the best.

It started working pretty quickly. There is an induction infusion then it’s a shot every 4-8 weeks. I’d say within 2-3 months things started improving.
In all honesty, biologics don’t usually have much in the way of side effects. Remicadee made me tired for a day but that was it until
I developed an allergic reaction. Humira worked pretty well for me for about 5 years. The problem with Stelara is the cost. $20,000 for that shot every month. It’s insane. Remicadee which has been around for almost 20 years is still $2500 an infusion

 

[Scipio]

Stelara is working for me. It kicked in pretty good by the 2nd month after the induction infusion. I'm on an 8 week injection schedule. No real problems so far, although occasional right side abdominal pain does start to creep back after about 6.5 or 7 weeks post injection. Then the new shot knocks it back again.

Also, one thing to consider is that of all the Crohn's drugs, corticosteroids, including long term use of Entocort, have the worst side effects of all. Worse than Stelara or any of the other biological.

 

[Maya142]

I also want to second what Scipio has said. My daughter has very severe inflammatory arthritis in addition to Crohn's and has been on and off steroids for 6 years (both Prednisone and Entocort). Last year she developed Cushing's syndrome - gained 30 lbs in 2 months and got stretch marks and the puffy moon face. As a 20 year old, you can imagine she was not thrilled.

But more seriously, then she got adrenal insufficiency, which means her adrenal glands do not produce enough cortisol (hers weren't producing any) since they were so used to getting steroids from an outside source. That can be very serious and even fatal if you go into adrenal crisis.

In addition, steroids can cause glaucoma, diabetes, increased risk of infections...trust me, biologics are MUCH better options.

I have two daughters who have been on biologics for 8-9 years, starting in middle and high school. NO side effects at all except tiredness the day after the Remicade infusion. Remicade and Humira worked very well for both of them. No increase in infections, even around germ-y middle and high schoolers and even in a college dorm.

Haven't tried Stelara but I have heard it takes longer to kick in than anti-TNFs.

But any biologic is better than staying on steroids chronically.

 

[my little penguin]

Ds started Stelara in late last year
It takes 6 months to be fully effective
He was on remicade and humira prior for years

To note on remicade /humira his scopes were so clean
Docs questioned his Crohns dx
After switching to Stelara
Evidence of chronic inflammation that was almost healed was found at 6 months on a scope

Side effects ARE not a given woth any drug
They are just a list of things that could potentially happen
You may have NO side effects at all
Long term use of steriods has givens
Not potential side effects

Ds has adrenal insufficiency from using too many steriods effects. For too long to help control arthritis

Unfortunately there isn’t s crystal ball on which meds will actually work for each individual
Good luck

 

[Nadia96]

That's awesome!! How long did it take before you noticed it working?
It's me, not my Dr. who is reluctant to try Remicade. I know it can cause scray side effects and also tend to stop working to to people building up antibodies quickly. I'm looking for something that's associated with longer term outcomes and less of the scary potential side effects.

I just started Stelara yesterday as for the doctors and me it’s the last choice of medicine for me. Back in 2014, I started Remicade as I was complaining of abdominal pain and I was on tablets for many years but they weren’t working as strong as when I first started them. I was on Remicade for 8 months before I ended up with emergency surgery and had a total colectemy. It actually made my symptoms worse. Before I started Remicade I only had abdominal pain but when I did start it the flare ups became more aggressive and had severe diarrhoea and lost quite a lot of weight. After the surgery I was free from any flare ups for a year and then I started Humira. I stopped that due to a reaction.

Last year I started Vedoluizmab as I started to have more flare ups, but then stopped it in January as it wasn’t working as effectively as the doctors wanted and I started Stelara yesterday. In the UK for Crohn's disease Stelara ink became approved last year and became free under the NHS

 

[northwesterner]

Let me start with ... I'd be surprised if your insurance allowed you to do Stelara before doing one of Remicade/Humira/Cimzia, primarily due to the huge cost disparity between the anti-TNFs and Stelara. You should take a look at what the pre-authorization requirements are for your insurer for Stelara ... they can be a royal pain if you're trying to get the medication outside of their set pre-auth plan (which could say - must have tried and failed one or more of Remicade/Humira/Cimzia) first.

All that said, 15 years with Crohn's Disease here. Did 7 amazing years on Remicade. Had 5 so-so years on Cimzia. Started Stelara last September. As my little penguin notes, it can take up to 6 months to fully kick in.

For me, it took the full 6 months. The first three months were really touch and go as I tried to get off prednisone, and there were a couple of episodes of pretty awful flare symptoms. With each successive month, though I was feeling better overall, there was always some kind of pain/flare/whatever that lasted for a few days. Finally hit 6 months in February, and I've been absolutely awesome since then.

 

[tzvia]

I did try Humira before and it didn’t work for me. Hopefully my insurance will take that into account. It maddens ne so much that insurance companies dictate what medicine you can have. This should be up to the doctor and patient. Grrr

 

[aypues]

My first biologic was Humira and it did nothing. They tried to double the dose but insurance wouldn't pay, so we switched to Remicade which worked immediately. amazing actually! I was on it for a year or so on a really high dose in combination with Cellcept and I felt fine, but my MRI was still bad so they put me on Stelara. It did nothing for me, even with an IV reload and double the dose. I now had to go back onto Entocort to cut the pain. I am anemic again too - iron and ferritin very low. Now just waiting a few more weeks for the Stelara to wash out completely so I can go back to Remicade. Hopefully I didn't build antibodies to it by now.

 

[tzvia]

I got my first dose of Stelara today! I hope it works! I’m still on Entocort but will be weaning off soon.

 

[tzvia]

I just started Stelara yesterday as for the doctors and me it’s the last choice of medicine for me. Back in 2014, I started Remicade as I was complaining of abdominal pain and I was on tablets for many years but they weren’t working as strong as when I first started them. I was on Remicade for 8 months before I ended up with emergency surgery and had a total colectemy. It actually made my symptoms worse. Before I started Remicade I only had abdominal pain but when I did start it the flare ups became more aggressive and had severe diarrhoea and lost quite a lot of weight. After the surgery I was free from any flare ups for a year and then I started Humira. I stopped that due to a reaction.

Last year I started Vedoluizmab as I started to have more flare ups, but then stopped it in January as it wasn’t working as effectively as the doctors wanted and I started Stelara yesterday. In the UK for Crohn's disease Stelara ink became approved last year and became free under the NHS

How are you doing on Stelara so far? @nadia96

 

[thore33]

Just had my 1st official shot of Stelara a week ago (did the infusion 9weeks back). So far, so good. My normal OBVIOUS symptoms like night sweats and cramping are gone. The invisible/internal effects will be unknown for a while. I'm going to get scoped in like 5months to check out progress on that front.

 

[tzvia]

Just had my 1st official shot of Stelara a week ago (did the infusion 9weeks back). So far, so good. My normal OBVIOUS symptoms like night sweats and cramping are gone. The invisible/internal effects will be unknown for a while. I'm going to get scoped in like 5months to check out progress on that front.

Good luck! Keep us updated. It’s been a week since my infusion. So far I don’t notice much of a difference.

 

[tzvia]

I just took my third injection tonight. I’m feeling maybe 20% better than when I started this medication. I’m hoping I get more improvement than this as I still havevalot if D and undigested food and fatigue. How’s everyone else doing on their Stelara?

 

[my little penguin]

Stelara took every bit of 6 months to start working for ds and even then he needed a more frequent dose of every 4 weeks at 90 mg

Good luck
Ds has been on Stelara over a year now

 

[lively_child]

It started working pretty quickly. There is an induction infusion then it’s a shot every 4-8 weeks. I’d say within 2-3 months things started improving.
In all honesty, biologics don’t usually have much in the way of side effects. Remicadee made me tired for a day but that was it until
I developed an allergic reaction. Humira worked pretty well for me for about 5 years. The problem with Stelara is the cost. $20,000 for that shot every month. It’s insane. Remicadee which has been around for almost 20 years is still $2500 an infusion

Just wanted to add... Remicade (including In-patient and infusion costs) for DS has never been below $15,000 and has been as high as $48,000. Our insurance does take care of all of that after deductibles, but wanted others to know that Remicade is also expensive.